26 June 2014

It's True What They Say

It's true what they say... No news is Good news!

It's been a while since out last blog update. We had a little scare with a nasty virus LadyBug was battling...  2 trips up to the hospital and 3 rounds of antibiotics later and it seems she is finally on the mend! Here fever is gone and the cough, well it's almost gone...She back to sleeping (huge sign of relief for mom and dad) and running around the house like a typical 2 year old - - - Playing, Dancing, Singing, Watching Movies, and just getting into lots of mischief :) 

So, for now... We keep playing and enjoying all the little things that make us smile. 

12 June 2014

ER Visit

We had our first Chemo scare this week. It was a night full of complete panic. 

LadyBug had her 2 year well baby check up on Tuesday. She did pretty well all day but later that afternoon she start getting this horrible cough and by later that evening she had spiked a little fever. While on chemo if Rylie's temperature hits 100.4 or higher we monitor her for an hour, take her temperature again and then call into the on-call oncologist and see what we should do if it had not returned to a normal range. At around 6pm that evening we took Rylie's temperature and she was at 100.8-immediate panic set it. I knew she had gotten the Hepatitis A shot that day but before when she got shots before she never really ran a fever... and then there was that cough. It was not anything major but put all those things together and it just spelled trouble. Trouble I was no where near comfortable with. 

We quickly finished up dinner and then settled in for some cartoons to see if we could get her fever to drop a little. While Rylie is going through chemo she can not have any Tylenol or Ibuprofen because a fever could be a sign of an internal infection or another serious complication and taking other medications could only mask those signs so our options to lower her fever are super limited. So, we tried some rest. An hour later her temperature came in at 100.4. Still too high for comfort so after speaking to the oncologist we were told to jump in the car and head up to the ER at Primary Children's Hospital for evaluation and fluids. 

It's a short drive from Bountiful but man does it seem like forever when you are running through all of the "what if's". The oncologist had called in ahead of time and told them we were on our way so they were prepared with some fluids and antibiotics for Rylie when we got there. That's when the real fun began...

First, let me start off by saying EVERYONE at Primary Children's has been amazing. It takes a special kind of person to work with sick kids and for the most part every experience we have had up there has been amazing but this visit was a complete nightmare!!! We had a super sweet nurse but man did she put our little ladybug through the ringer. Accessing Rylie's port has been a bit of an issue these last few times so we are all pretty sensitive on if and when she should be accessed. Because of her fever there was no doubt Rylie would need to be accessed. At the very least she would be given fluids and some IV antibiotics. We explained the situation to the ER nurses and told them the best bet would be to get child life involved. Child life was busy with another patient so I guess they decided it would be best to just continue on...That was problem number one. Taking her out of her routine is something none of us were comfortable with! Then came problem number two... they decided against waiting for the numbing cream to take effect and instead decided they would just use the freezing spray. Note to all parents... the freezing spray SUCKS and does not help your child one bit! There is a reason oncology uses the cream!!! That was straw that broke the camel's back for Rylie. She was not a fan and began fighting immediately! Then came the biggest problem of all... the nurse had never accessed a pediatric port!!! Rylie was stabbed 3 times and each time they "Missed" the access point. As you can imagine by now Rylie was in complete hysterics. Crying and screaming and begging us to just help her. She just kept saying over and over again that she wanted to go home. She was crying, I was crying, and poor Brett was just trying to figure out how to keep us all from completely falling apart. After missing a few times the nurse decided she needed some help and grabbed 2 more nurses. But it was just a little too late. Rylie was ticked and there was no way she was going to let anyone touch her. She fought, oh man did she fight. It took Brett and I AND 3 nurses to hold her down so they could get her accessed and hooked up to the IV's. It was just a nightmare. Poor thing cried for a good hour after it was done and over with and each time someone even tried to come into the room she burst into tears again- It was completely heart breaking! 

Finally after she was accessed and hooked up to the IV's we were able to relax a little bit while we waited for her blood work to come back. Let's Just say I have never been SO happy to see Frozen on a TV as I was that night. It was the only thing that calmed her down and brought at least a little smile to her face! Thank god for Elsa and Olaf! :) 

Thank goodness we have Toby to Snuggle 

It took a few hours but her blood work came back within the normal range for a chemo patient so we were told we did not have to stay overnight (insert happy dance and a HUGE sign of relief)! They were still pretty concerned with her cough and increased heart rate so they wanted us to stay a few more hours and get her re-hydrated and let the antibiotics kick in. So, little Miss and I snuggled up and closed our eyes and waited until we got the go ahead to go home! Just after midnight they finally felt like her heart rate and temperature had stabilized enough to send us home! De-accessing her port was another nightmare but we were going home so I think by that point all of us just tolerated it and knew in just a few minutes we would be heading home and away from the pain. 

Hospital Snuggles

Rylie is still battling the cough and she is in a bit of pain from being accessed so we are just taking things slow and allowing her the time she needs to rest and recover. She is still a little traumatized the the whole ER experience so we are back to square one with getting her use to her port. Hopefully with some help from the oncology team we will get her back to her happy, playful self in no time! 

Thank you for all of your love, support, and prayers! We are forever grateful!

First Dentist Appointment

Our little LadyBug had her first meeting with her dentist today. Oral health is important in general, but for a child who is going through chemotherapy is becomes an absolute must. Chemotherapy is a tough drug to tolerate. 

Rylie's biggest hurdle with chemo thus far has been mouth sores- the nausea has been pretty easy to get a handle on but the mouth sores have really gave us some trouble. When her blood counts drop she gets pretty miserable and weak and the mouth sores don't make things any better. She kind of goes on a banana and milk diet until her mouth feels good enough to eat again. Good thing about going to the dentist is we get a few extra tools (mouth wash in our case) and an extra brain to help us think of ways to ease the pain of these darn mouth sores. 

When we first checked into the hospital we had a really amazing nurse that told us there would always be something we could do to help Rylie be as comfortable as possible so to push the doctors and nurses into doing what we want and need them to do for her. She reminded us that we know her best so if something doesn't feel right to push back until we came to a solution that worked for everyone. We are so glad she gave us the permission to be "pushy" parents. Mouth sores are not "typical" for someone of Rylie's age but it was obvious to us that Rylie was miserable. Other than the obvious signs of the mouth sores she just doesn't eat- that is not something Rylie usually does. So we pushed back a little and between the dentist and oncologist we were able to come up with a few different options to help Miss Rylie through this next month of pain which will hopefully help us to figure out a good routine for her moving forward! It's definitely a continued learning process! 

2 Year Well Baby Check-Up

Little Miss Rylie had her 2 year old well baby check up on Tuesday with the Amazing Dr. Reese- That man is just so sweet with all the kiddos... and I am pretty sure he has treated every child that has ever lived in Bountiful. At Rylie's genetics appointment last week our nurse noticed who Rylie's pediatrician was and said he was her pediatrician when she was younger as well. :) 

She did really well. Because she is on Chemo she only received one shot, She can not be injected with any live acting viruses. She is a pro at the "Routine" stuff so this appointment was a breeze! 

She is still a tiny little thing but she's growing and thriving and that's all any parent could ask for! 

Weight: 22 pounds
(2nd Percentile)

Height: 32 1'4 inches
(12th Percentile)

Head: 49 centimeters
(84th Percentile)

03 June 2014

Chemotherapy- Course 2

Course 2 of Rylie's chemotherapy protocol is in the books! 

Wednesday was a busy day- after meeting with Dr. Viskochil (the geneticist) in the mornin we had time for a quick hospital lunch and the we were headed upstairs to meet with Dr. Bruggers (the oncologist). Rylie's treatments now move to once a month which is nice, the only crappy part is these appointments will last 4-6 hours depending on how much IV fluids Rylie needs before and after chemo. 

These appointments have become pretty routine for Rylie... She knows just what to do when we walk in the door...

Weight and Height check...

Blood Pressure and Temperature Check...

And then we are off to our room to get started on that months chemotherapy treatment. Getting accessed seems to be the toughest part of this entire ordeal for Rylie. She has such anxiety about it. They tell us the pain is minimal because she is numb but nonetheless she still HATES it! Rachelle, our child life specialist does an amazing job at playing with her and helping her to get comfortable each time and she is getting lots better but it's still so hard to see her cry and so anxious at what's about to happen. 

     Playin with all the fun stuff Child     
               Life brings in for her! 

Once our review of the week is done we move on to getting treatment. This month we started with 30 minutes of fluids, headed back to the treatment area for 2 hours of chemotherapy (both Vincristine and Carboplatine will be given now), and then 1 more hour of IV fluids. These last few weeks our appointments have only been about 90 minutes so to jump to monthly and 4 hour appointments made us a bit nervous. It's not easy keeping a two year old entertained for 4 hours let alone keeping her entertained for 4 house in a small confining space while also hooked up to IV's. Brett and I were slightly worried but she once again was amazing. She had a few snacks, watched done movies, and of course played with the kitchen. 

She continues to be our little rock star amazing us everyday with her strength and courage! 

         Fight- Conquer- Win! 


Little Miss Rylie had an appointment with her Geneticist last Wednesday. First, let me just say Dr. Viskochil is a pretty amazing guy! He takes so much time with each patient and the thoughtfulness and consideration he gives to parents is just amazing. He really makes you feel so comfortable. 

We spent the first parent of the appointment reviewing Rylie's chart and getting re-familiar with everything that has happened in the last 6 months. Dr. Viskochil was so surprised at how quickly treatment was started. He said typically children do not present with these types of tumors until around age 3 and after that they typically take months if not years to grow into the point in which treatment is needed... Rylie's tumor was found at 20 months and progressed to the point of needing treatment in just 6 weeks... Puttin TV us in what Dr. Viskochil calls uncharted territory. Yeah, super comforting to hear! 

For Dr. Viskochil the next big step in Rylie's treatment plan is her next MRI in August. By August we should be able to see that the tumor has stopped growing which means Rylie is responding well to treatment. So, were holding out breathe and will pray for good news comes August 4th. 

Other than the obvious issues with the optic nerves Dr. Viskochil was pleased with Rylie's growth and development. She is small, but getting plenty of calorie and growing at her own steady pace. She has also presented with no new NF symptoms so that was a HUGE relief for everyone. 

So we continue on with chemotherapy and check in with Dr. Viskochil again in December. 

Ice cream after her blood draw- sweet treats make everything better!